New podcast episode: 10th anniversary impact stories – part one

“I would say that being in BBMRI-ERIC is a very good thing: it makes you sure that you are doing great things and you are going along with other countries which are much bigger, with more resources, more scientist, everything more” Andres Metspalu, BBMRI.ee.

This is a two-part episode which shares stories from across BBMRI-ERIC’s Member States and communities that were presented at the BBMRI-ERIC 10th anniversary workshop. Each story demonstrates the wide-ranging expertise and impact of the research infrastructure that our community both shapes and benefits from.

In this episode, you will hear impact stories from our IT and ELSI services introduced by Petr Holub, BBMRI-ERIC Chief Information Officer, and Michaela Th. Mayrhofer, Head of BBMRI ELSI. You will first meet Andres Metspalu, representing BBMRI.ee and Michael Hummel, representing the German National Node.

These are followed by two impact stories from Annelies Debucquoy and Zisis Kozlakidis, respectively National Node Director for Belgium and IARC/WHO.

Look out for part two that will contain stories from Quality Management and Biobanking Development.

The full transcript is available here.

BBMRI-ERIC Podcast

“Without the patient citizen’s data, there is no future for research.”

Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.

The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” – which will serve research, innovation, policy making and regulatory purposes.

The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data.

Why does communicating about EHDS matter?

Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?

This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.

The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.

Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.

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New podcast episode: 10th anniversary impact stories – part one

“I would say that being in BBMRI-ERIC is a very good thing: it makes you sure that you are doing great things and you are going along with other countries which are much bigger, with more resources, more scientist, everything more” Andres Metspalu, BBMRI.ee.

“Without the patient citizen’s data, there is no future for research.”

Why does communicating about EHDS matter?

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